Wednesday, September 28, 2011

We had the walk last Sunday and it went unbelievably well! The day started out a little crazy. We woke up to downpours and threats of thunder and lightning. Bill and I decided we needed to change the park that we were originally planning on having the walk in, to a park with a shelter. We made some phone calls and then it went much better. The weather was okay, we had a huge turnout and as of date we have raised almost $10,000.00! My mom flew up for the walk, both of Bill's parents were there and his brother and sister. We had cousins, aunts and Lucy's Godmother and friends attend and were all decked out in our "I love Lucy" attire. It was wonderful! We felt so supported and I realized that there is a "village" that is cheering, supporting and loving Lucy! There were two experiences that day, that gave me goosebumps.

When I woke up that morning I was very proud of the money we had raised but felt that I wasn't sure if I would do it again next year. I don't like asking people for money, nowaday there are walks for everything and it took a lot of my time. But, then these experiences happened:

Experience #1

There was a 19 year old girl at the walk named Elizabeth. Elizabeth was at the walk with her mom and had joined a local team with out even knowing the kids. Elizabeth is 19, attending UW and has apraxia! She has been in therapy since she was 3, but did not get a diagnosis until she was in 2nd grade. Elizabeth's mom stated that she has been waiting for the northwest to finally recognize apraxia and they were so thankful to be there. I talked to Elizabeth and was intrigued by the way she talked. Her speech was in her throat, kind of like glottal sounds. It was different, but not too different. I found myself listening to her and praying that Lucy will talk that well someday! Her mom was so thankful and Elizabeth was very proud. She knew how hard she had worked and this group of people are the only ones who would understand that!

Experience #2

A dad walked up to me after the walk and asked if I was Kari Weed? I said "yes" and he said, "Thank you for organizing this walk, for the first time ever, I heard other children who speak like my son. Thank you." I had tears in my eyes by the time we were done talking.

Now we will be organizing this walk every year! After the walk was done and we cleaned up, some of our family came back to our house. We toasted with champagne, ate chicken wings and then crashed for a great nap! After nap time we again met with family and had a celebratory dinner. It was a wonderful day!

I have learned that yes there are walks for everything, but this is our thing. These parents and kids need a place to see that other families are dealing with the exact same issues. Our kids were celebrated that day. Our kids who get the dirty looks in restaurants when they scream a lot because they cannot talk; our kids who we all fear will never speak; our kids who we love so much and we would do anything to give them a voice. Yes, we will be planning this walk again next year because this is our thing.

Thank you everyone who supported us!

[Special Note: CASANA thanks the volunteer efforts of Kari Weed and all the Walk for Apraxia volunteers who dedicate their time to bring awareness to their communities, and so much more. At the Walk for Apraxia you are among "your people", those who understand just what you are going through and share the struggle and the hope. The Walk for Apraxia also raises important funding for programs and research.]

Friday, September 9, 2011

Written by: Roy Elmer, Luke’s Grandfather Please Note: Terminology used throughout this story, such as Speech Dyspraxia, is the same as Childhood Apraxia of Speech. Triathlete, Luke Farrell, has had Speech Dyspraxia, SLI 5-6, since birth. Now 18, Luke is in his final year of school at Immanuel Lutheran College at Buderim on the Sunshine Coast. He also just received advice of another selection in the Australian team to compete at the World Junior Championships in Beijing, China in September 2011. He is widely regarded as an outstanding young man and a rising talent in the junior elite level Triathlon in Australia and internationally.

LUKE’S EARLY LIFE—A ROUGH RIDE.
At the age of four years, while living in Brisbane, Australia, Luke had not begun to speak and was diagnosed by a government department psychologist as having autism spectrum disorder. At this departmental officer’s direction, he was transferred from his local kindergarten to a “special” preschool, attended by children with serious disabilities. Luke was surrounded by youngsters with serious developmental and behavioral problems and had some disturbing experiences. These experiences created great angst for his parents regarding the short and long term effects. His parents made several approaches to the Education Department to sanction withdrawal or transfer, but nothing was achieved.

Once Luke reached primary school age, he was sent to a “special education unit” at the Mt. Gravatt East primary school in Brisbane. This brought new challenges for Luke, struggling to separate the teacher’s voice from other sounds in his surrounding environment and unable to comprehend the lessons. In attempt to cover this, he began to imitate other student’s reactions and behaviors, only to mask further the true nature of his problem. As time progressed, his family became aware that the only appropriate intervention he was receiving was one half hour every fortnight of speech therapy. His tuition time was shared with six other students and other lessons/services provided to Luke were of no benefit. His parents saw him being prepared solely for a life of limited expectations as a disabled person.

A GLIMMER OF LIGHT.
Luke’s first signs of an improved prognosis appeared only after he had the good fortune of being referred to Jane Remington-Gurney for speech therapy. Jane runs a company called “Options” Communication and Speech Therapy, operating at the cutting edge of the science of her profession. Upon the first meeting and subsequent consultation processes with Luke, Jane diagnosed Luke's condition as Verbal Dyspraxia, a disability presented as a speech language impairment, SLI 5-6, and a hearing and comprehension difficulty. Following Jane's diagnosis, Luke was referred to Dr. Ross, a specialist in Autism disorder and president of the Autism Association in Australia. At this consultation, Dr. Ross agreed with Jane’s diagnosis in which Autism was eliminated and Verbal Dyspraxia, SLI 5-6, was confirmed.

PATHWAY FORWARD.
Luke's parents were determined to give him, for the rest of his school life, the opportunity to keep in touch with his own peer group by finding and establishing his own level in his future. Their hopes were pinned on the private school sector, combined with continual monitoring and guidance from his speech therapist, Jane. The next step was to find a private school willing and able to accept the challenge of providing Luke a place in one of their classrooms as well as a meaningful education. Finding it proved to be very difficult as their search extended beyond Brisbane. It was not resolved until the principal at Immanuel Lutheran College, Buderim, called a meeting of the staff members who would be involved in delivering Luke’s education program. They accepted the challenge and for the first time Luke enrolled at Grade 3 to a normal classroom. The very next day the family relocated to the Sunshine Coast. This was an enormous dislocation for Luke’s parents who were faced with many challenges, including selling the family home and managing their Brisbane based business from 100 kilometers away.

Although it was understood that given the delayed start to education proper, Luke would have significant hurdles to overcome to graduate from high school. Guidelines were put in place to ensure minimum targets were achieved for Luke to have the ability to interact with other members of mainstream society, to have a positive self-image, and sufficient life skills to make his way in life. Happily, this target has been surpassed with already several bonus outcomes. Luke’s easy going nature attracted friendships essential to peer group acceptance. His shy but honest modesty following his successes with his sporting endeavors reflected credit on his school and firmed up his friendships, all of which are fertile ground for the formation of a healthy self-image and self-esteem.

SPORT—THE KEY TOWARDS NORMAL LIFE.
The role that Luke’s participation in sport has played in his progress towards a normal lifestyle is impossible to ignore. At the age of thirteen, after watching a televised triathlon event, Luke announced he was going to become a triathlete. Although he had never owned a bike or displayed any particular talent for running, he did not regard this as an obstacle. His parent’s only reaction was by providing encouragement, support and opportunity. That year, Luke entered the Mooloolaba Triathlon in the "come and try" series. This proved to be the most enjoyable experience in which he competed successfully. In the next four years, Luke’s progress displayed a rise through district, regional, and Queensland representative levels as he participated in state teams that won the Australian team’s championship, and then the honor of representing Australia in a triathlon. Luke appeared to make a quick and smooth transition from a “nobody” to “a big time somebody.” Nothing could be further from the truth.

In late 2008, Luke, who was only 15-years-old at the time, was producing impressive performances in the Gatorade age group events held in Queensland. As a result, he was contacted by the Triathlon Australia and with only one week’s notice to the first event, he was advised to compete in the South Australian, West Australian and ACT Triathlon State, under 19 age group, Sprint Championships. These races formed part of the selection trials for the Australian team to compete in the World Triathlon Sprint, under 19 age group, Championship. Luke finished first in Gleneg, South Australia; and second in both Rockingham, West Australia and Canberra. ACT. After returning home, Luke competed in the remaining events, winning the “Gatorade” series in his age group in Queensland, across six triathlons at different venues. These performances had been the reason for his gaining selection in the Australian team for his first time.

Following his results in special trials, he received advice from the Queensland Academy of Sport that he was an automatic selection in the Triathlon Queensland Junior Emerging Triathlon Squad (JETS). Shortly after, he also received advice from Triathlon Australia of his selection for their 2XU National Junior Development Camp. He was advised that his selection was based on his “Commitment, Attitude and Performance” and importantly, his “potential to become an elite athlete.” He would receive this invitation again in 2011.
In 2009, 16-year-old Luke was one of the youngest triathletes selected to represent Australia at his first ever World Junior, under 19 age group, Sprint Triathlon Championships on the Gold Coast. He finished in eleventh position in a field of 57, under 19 age group, competitors from around the world. After outstanding performances in 2010 state and national competitions and selection trials, he again achieved selection in the Australian Team for the 2010 World Junior Spring, under 19 age group, Triathlon Championships held in Budapest, Hungary. The domestic season finished in mid-March so Luke had only six months of training with no competition until the race itself in September. Despite these conditions, Luke finished in fourth place.

After resuming from his rest period after Budapest in late 2010, Luke competed and finished seventh place in his first elite Open Men’s triathlon event, the Queensland Triathlon Gatorade No. 1 race. From there he went on to achieve his third consecutive win, blitzing the field by a full two minutes, in the Queensland Triathlon “All Schools” 2010 championships. In 2011, he finished in second place at the Open Men’s event for the Gatorade No. 2 race at Robina on the Gold Coast, followed by a win in the Gatorade Bribie Island Junior, under 17 age group, Triathlon. Both proved to be just a warm-up for the Triathlon Australia, under 19 age group, championship held at Canberra in which he discovered his racing bike had a crack in its frame just before leaving. He still managed to finish second place at the 2011 Australian Championship event on a borrowed bike.

Over the next few months, Luke learned about the impact of illness on training and competition performance. He suffered a series of health challenges, including an ear infection, a virus and ultimately bronchial pneumonia, losing 5kg of body weight. Luke’s training load and competition schedule were reduced and he displayed great courage in persevering, especially with team events. Although the past few months have been a little quieter as a result of his ill-health, the exciting news is Luke’s selection again for the 2011 World Junior, under 19 age group, Triathlon Sprint Championship to be held in Beijing, China.
Luke’s support group is happy with his progress, despite the setback caused by his untimely illness. He is considered to be on track with his goal of life as a professional triathlete. After returning from a necessary rest period ordered by his coach, Luke entered the Hervey Bay “Olympic Distance” Triathlon to record a base time to qualify for future major events; Luke finished in fifth place in this Open Men’s competition. While there, Luke found himself competing against one of his idols, Courtney Atkinson. They talked after the event and instantly became friends. Today, their friendship continues by keeping in touch through Facebook. It is Luke’s sporting achievements that have opened doors to conversations like this, which were never dreamed of in those difficult early years.

TIME TO MAKE A DECISION ON A FUTURE LIFE. After Luke finishes school in late October 2011, he will begin life as a semi-professional triathlete until he achieves his license as a professional. He will then be nearing the end of his third year of a four-year Operational and Strategic plan, put together by his family support group who were drawn together by Luke’s determination to succeed. He also aims to be a professional coach of these skills later in life, a remarkable ambition for a lad with Verbal Dyspraxia. Luke’s story reveals great strength of character, dedication and determination to succeed. His diagnosed medical condition is incurable, however Luke has used his sporting experience and successes to throw off its shackles and earn the admiration and respect of his peer group, both at school, in sport, and in the broader community. He has not cured himself of his condition, but has learned to “live with it.”

His appointment as captain of the Sunshine Coast Secondary schools regional team in 2011 indicates the respect he has earned from the regional team’s management. The team members and other competitors accept him into the peer group unconditionally and as a teenager living with Verbal Dyspraxia, Luke is immensely proud of his achievement in making his first public speech on accepting the trophy on behalf of his team.

In his short eighteen years to date, Luke Farrell has trodden over more obstacles, overcome more fears and moved further beyond his comfort zone than many people are asked to do in a lifetime. The simple act of mixing with his peers and fellow athletes who enjoy fluent communication skills has tapped his reserves of intestinal fortitude, and his peers’ lives have in turn been enriched as they have come to grips with communicating with Luke. Luke hopes his story, which basically comes down to accepting his situation, learning to cope with it as best he can, looking to his strengths, and getting on with life, will offer hope and support to individuals, parents or families facing similar challenges.

About Apraxia-KIDS & CASANA

Apraxia-KIDS is a program of CASANA (The Childhood Apraxia of Speech Association of North America). CASANA is the only national 501(c)3 nonprofit organization dedicated EXCLUSIVELY to children with apraxia of speech and their families